Archive for the 'Family' Category

I have always loved Holy Week. I grew up in a liturgical church that revolved around the seasons of the church calendar. I had dreams of these things for my new baby, but we all know the NICU brings changes and how I approach religion changed a lot.

I couldn’t be the “bring my kid to all the things” parent I thought I would be from the get go. I had anxiety about taking him around a bunch of people once we were allowed to. Things just didn’t work out. Now that we have been in the habit of watching online and not being part of a community. It is hard to go. It doesn’t help that the Mr. and I have conflicting viewpoints on the style of worship we prefer.

I have a long way to go in teaching my son to know that kind of peace you have when you know there is always someone there watching out for you and loving you no matter what. Someone who is stronger than you who and who knows your weaknesses and knows your needs before you can think them or even put them down on paper. I want to remember what it felt like when I believed I could turn all of my problems over like blowing dandelion fluff into the wind.

I use this blog to vent worry and frustration so that I can come to terms with things and feel more at peace. When I am comfortable in my own skin and with what’s going on around me, I can create that safe haven for my family that church always was for me growing up. Right now, I am just so consumed with worry. I have just an instinctive bad feeling that something is wrong, and it scares me that either I am projecting my anxiety or a mom just knows.

We had our first winter public birthday party with his friends at an indoor inflatables place.

The King is Here!

I am sorry for the lack of updates. We had a big specialist appointment looming and I just didn’t have the gumption. Now I have a diagnosis with more questions than answers, and I’d rather just celebrate my handsome guy.

Also, this is the 4th anniversary of going from vent to CPAP and getting to touch his hand! So glad his nurse made me start a calendar journal.

We went on vacation to Florida in October. I didn’t post about it. Drake had a horrendous bout of croup while we were in Florida. I almost took him to the emergency room, but his pediatrician on long distance listened to him over the phone and advised hot steam in a bathroom instead. Not breathing well is never a state you want for your kid. He was well the first night and we went to Mickey’s Not-so-Scary Halloween Party. That was a blast. The rest of the week. Not so much.

He has been on antibiotics every 3 to 5 weeks since April. Within 2-3 days of the start of the sniffles, it goes straight to both his ears. Our follow up from the last Sunday urgent care visit is tomorrow. I’m going to push for him to visit his ENT. His mouth cyst could use a check anyway.

We are nearing the end of our EI, First Steps journey. Our final IFSP meeting was last week. The week prior he had his evaluation with his future elementary school if he qualifies for preschool at 3. His PT is pretty sure he will. She, and our coordinator are going to come to the January meeting about his assessment results.

I am torn, and so is daddy. Obviously, we want him to have the services he needs, but we really like his private preschool. Flip side, we could really use the economic break of a half day of free school. Ugh choices. And if we don’t start him on IEP’s now, if he needs help later what will the battle be like to get it?

He’s just not there yet gross motor wise. We’re operating in the 20-24 month range, which is great for where he started from, but I KNOW he needs the PT services to continue. I joined a Hypotonia parent group on Facebook.

We are worried he may have had a seizure after spending the night with his Gammy. She said he spaced out for a long time and touching him and speaking to him she couldn’t get him to answer. When he came out of it, he just said Hi Gammy like nothing was wrong and she took him to school. Pediatrician is having us keep a journal and taking a wait and see approach. He’s never done anything similar to me.

I have been asked to teach an associate’s level class next semester now that I have completed enough graduate hours. I am really excited and I hope it is a good experience for myself and my students. It will be a small business finance class.

And then…Christmas. And then…3. What the heck? Where did my tiny baby go?

I am so, so grateful for Dr. Ponseti and his Ponseti clubfoot treatment. It means that Drake has a chance of full foot correction without a lifetime of scars, surgery, and pain. There is always a chance even with strict following of treatment protocol that there can be relapse. It’s something that I’m sure all clubfoot/talipes parents live in fear of.

But, oh, that sigh. The huge heave of chest and shoulders that the little dude gives as he gives up resistance, holds tight to bubble puppy or Jake the pirate, and says “ok, nite shoes, mommy.”

That sigh. So sorry baby boy.

Oh a happy note. His Gammy is treating us to a week at her timeshare in Orlando next month. Yesterday, we hit the Disney store for the first time. It made me so excited to see his reaction to the actual park. He was running around. Peter Pan! Bucky! Jake! Mickey Mouse! Plane! It was freaking adorable. Mickey’s Not So Scary Halloween Party, we will see you in 3 weeks! I’ll be there with Jake and Capt Hook. I’m the Pirate Princess, of course!

Looking at those princess dresses makes me super relieved to have a boy!

In two weeks, I will officially go back to full-time hours at work. By January, I will have completed enough Master’s level courses to try teaching my first class, so this fall I am receiving mentoring on instructional design and classroom management. In the midst of all of that excitement, Drake will be going to school full-time for the first time. Since February, he’s been going part-time 2 days a week while I go to the office. He’s been doing really well, so we feel he’s ready for more.

I am super from being a domestic goddess, and for someone who is home a majority of the week my household chores could probably have been done a little better. However, I have lots of memories of morning walks, coloring and finger painting, dancing to Choo-Choo train songs, turning a kiddie couch into a car, table forts, and couch snuggles for story time. We had random trips to the zoo just to ride the train, therapy visits from EI, and going to the park after nap time.

I know I will always treasure this 2.5 years at home. At first, it was to protect his preemie immune system. Then, it was to make sure we made the most of his Early Intervention and other therapies. Now it’s time for him to learn how to enjoy the company of other kids and following a classroom routine, and it’s time for mommy to resume working. My little guy isn’t a fan of following plans that aren’t his own.

When we were first in the NICU and for the first year home, prematurity, its effects, and my guilt were all-consuming. These days, I follow more clubfoot treatment groups on Facebook than preemie ones. As he grows, I worry whether I am using his “night-night” shoes optimally to give him the best chance of full correction. We’ve had several nights of “ouch hurts” and “nite shoes off” screaming lately in the wee hours which always make me nervous, but usually ends up coinciding with a growth spurt.

I will never, ever forget my fear when he stopped breathing after choking due to GERD two months after coming home. The fear in the paramedic’s eyes on the ambulance ride to Children’s when he realized he didn’t have a mask small enough. Those memories are being supplanted by the sight of an excited two year old boy on a ferry ride or the thrill he has when he spots a train on a bridge.

We aren’t done dealing with the effects of prematurity. We’ve just been very lucky. He will probably always wear AFO’s for low muscle tone and weak ankles. We’re still pushing to get an MRI because he’s still showing some weakness on the left side versus the right that concerns his PT. But all in all, life is pretty sweet these days and thankfulness has finally overtaken fear.

Last night, I rocked D while he slept fitfully in 20 minute increments in between boits of screaming not crying and temperature spikes. This morning our pediatrician handed down the verdict, our first double ear infection.

While we were there, I had his blood checked, too. He’s just been lethargic and off for a bit, and yep his iron count is a on the low end of normal. We’re going to try a new vitamin and have a follow up.

We’ve now entered “mean” stage. My sweet baby is now a toddler who likes to slap and kick his frustrations. So far time outs to chill and learning to apologize are working.